Chapter 318 - Disappointed Yet Relieved
In different circumstances we should be on our way south for the wedding. With much anguish I opted out of attending and then cancelled the motel reservation. Then I felt relief, having not realised how much stress I had been under vacillating between the thoughts of causing her pain and distress and disappointing the family. Then I was told by someone close that "it was all in her mind" and that we should attend the wedding (note that at our rate of travel these days plus late starts and early finishes, the trip lasts 2 days each way). Many years ago a retired nurse, sitting with her during a panic attack phase while I did some supermarket shopping, also said the same thing "it's all in her mind". On that first occasion I made no comment; this time I stated that it was not her decision not to attend, but mine. Then later I wrote the following (edited) email while in a cool and considered mind.
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[Her] "imagination" had nothing to do with my deciding not to attend [Granddaughter's] wedding. My decision had all to do with her medical conditions due to her Parkinsons and its medications. She is now in her 22nd year of a slowly deteriorating condition and can be described as the disease's end stage (literature usually says this occurs by year 12), when the standard medications tend not to be effective and there is a fine balance between being over or under medicated; over medicated producing painful, disabling symptoms and under medicated producing immobility. Continuous infusion of Apomine is an attempt to stabilise her symptoms; so far this drug has not been very effective and of itself it produces other complications.
Posture - inability to stand upright, compounded by some deterioration in several vertebrae.
Gait - unable to stride normally, mostly shuffles while pushing a walker either inside or outside the house.
Mobility - most often unable to stand without assistance, her legs are not free to move, her hands and fingers become too stiff to handle craft objects, difficulty doing up buttons. Usually she is unable to rise from the toilet and pull up her clothing. In recent months, while walking with her walker, she loses tone in the muscles of her left leg, which tends to collapse beneath her weight and she has almost fallen but has been save by grabbing me or other objects. She has difficulty going up and down steps and fears doing so, especially if there are no railings.
Freezing - Unable to initiate or continue motion when walking, unable to "tell" her feet to move or step, unable to move toes etc of her feet to maintain balance (this frightens the hell out of her).
Stiffness - inability to move arms and legs easily. I believe this contributes to her inability to wipe herself well after a bowel motion, tending to cause thrush and urinary tract infections which are minimised by her toilet at home being fitted with a bidet.
Nocturia - needing to empty her bladder up to 6 times each night, usually needing assistance to sit on the commode in the bedroom.
Dyskinesia - uncontrolled painful movements (in her case legs and feet) causing cramping in leg muscles usually due to peak dose levels of L-dopa, but [she] seems to also suffer diphasic dyskinesia that occurs when serum levels of L-dopa begin to rise and again as L-dopa serum levels decrease to near zero in the 4 hour cycles of her conventional medications (Apomine infusion has not eliminated the "conventional" medications) so in any one 4 hour cycle she may experience three dyskinetic periods depending on medications which are not the same at each 4 hourly dose.
Peripheral Neuropathy - weird tingling sensations in feet and legs, numbness in feet ( causes difficulty in "knowing" where her feet are, sense of swelling in feet (not observable in a physical sense).
Myoclonus - a weird "shudder" she senses across her shoulders and up into her head. This happens most frequently as she is dropping off to sleep, causing great difficulty in falling asleep, which together with the nocturia, makes for a very poor night of sleep. Over the years she has attempted to describe this sensation as "someone walking over my grave", a comment that I and others have tended to dismiss as nothing more than a quaint colloquialism.
Spatial Orientation - she has difficulty sensing relative distances between objects, whether surfaces are level, fears walking on a sloping path, fears stepping across a gap (for instance between a railway carriage and platform).
Claustrophobia and Agoraphobia - she fears restricted spaces (such as the toilet rooms in many houses, many built without the need of a walker or an accompanying carer in mind and confined spaces such as building lifts), cluttered areas where obstacles may impede her movements, and, to a lesser degree, wide open spaces without objects to grasp or sit upon.
My descriptions above are my layman's interpretations; Google and Wiki will clarify.
So your comment that "it's all in her mind" is true in a sense, since in her "mind" does she perceives her environment, senses pain and initiates and maintains activity but in the way you intended was hurtful and wrong. Parkinsons is a debilitating chronic condition with no cure, medications only alleviate symptoms for which the price is other compounding difficulties.
[.......]
So, no, we are not attending [Granddaughter's] wedding simply because I decided, all by myself, that a 2 day trip each way and several days in [Pivot City], with nights spent in motels of varying degrees of hospitality for those with a disability, was more than [she] should tolerate. I contemplated attending by myself while placing her in Respite (for which we have gained approval and assistance for up to 65 days per year), or called upon relatives to stay with her in my absence, but I decided that I cannot desert her to either hospital-like conditions or to others inappropriate to help her with private matters. Her use of the Apomine infusion pump in either situation was of no concern since the palliative care nurses are able to call to attend to attend to that each day. Obviously, temporarily staying in a relative's house in [Big Smoke] is completely out of the question.
Our recent Golden Wedding Anniversary reminded us that vows made, so easily broken in many cases, were to look after one another, come what may. We are doing our utmost; other issues are subsidiary.
And shit happens.
**************************************************************************
So, please, when referring to the behaviour and emotional state of a PWP never ever say "it's all in the mind" (for that matter, when referring to anyone with a neurological disability). For if it's not of and in the mind then we are not human.
Yet what the above has alerted me to is our unpreparedness for what must surely happen within the coming decade (sounds so much longer than 10 years) when we have both exceeded our "use by dates", We may have wills, powers-of-attorney and ACAT assessments for respite in place, a reasonable asset backing but how in hell do we prepare for the personal, emotional and practical matters when one of us dies? Two scenarios, neither of which one wishes to contemplate.
Not much has changed otherwise. Last week we made the short trip to Hot Air City where we bought an "over the bed" table, on wheels, of the type used in hospitals, a better type of bed pole and ordered a Revolutionary Chair, an expensive chair on which the seat is able to rotate +/- 90 degrees as well as forward by some 100 or so millimetres for use at a table or desk, because she is frequently trapped. frozen, facing the kitchen table or her desk and I need to drag the chair on which she is seated across the floor in order to rescue her - not good for me or the furniture. I may buy a second should the first be successful.
One morning when the Apomine infusion needle was removed there was quite a blood flow, requiring a small round plaster to stop the flow. Days later there is quite extensive bruising around the site. She often reports that on initiating an Apomine bolus dose the big toe on her left foot "tingles"; she yelped in surprise the first time this happened. And if I have her do the Parky finger-to-thumb touching exercise the top of her head tingles and/or itches. The itchy areas on her arms and legs have disappeared, leaving only small scabby bits where the skin had broken. An area on the back of her neck also began to itch and was irritated by the cord supporting the Apomine pump bag but that has almost cleared.
Even though she adjusts the height of the bed at times during the night, there remain a mountain of pillows around her bed and sometimes I wake to find her upside down on the bed.
Some nights she may need the commode only twice, usually more frequently. For instance, this morning between 4am and 5.30am she used the commode 5 times. I must contact the OT at the hospital because the replacement commode is too high, her feet don't touch the floor when seated, and sometimes helping her on and off is a strain.
She found the word "Myoclonus" in one of her PD books; a word and description she over-looked in the past. We are so pleased to have a word to describe the feeling when speaking to learned professionals. Similar to the word "diphasic" mentioned by Polly the PD nurse. A misguided sense of achievement perhaps?
*********************************************************************************
[Her] "imagination" had nothing to do with my deciding not to attend [Granddaughter's] wedding. My decision had all to do with her medical conditions due to her Parkinsons and its medications. She is now in her 22nd year of a slowly deteriorating condition and can be described as the disease's end stage (literature usually says this occurs by year 12), when the standard medications tend not to be effective and there is a fine balance between being over or under medicated; over medicated producing painful, disabling symptoms and under medicated producing immobility. Continuous infusion of Apomine is an attempt to stabilise her symptoms; so far this drug has not been very effective and of itself it produces other complications.
Posture - inability to stand upright, compounded by some deterioration in several vertebrae.
Gait - unable to stride normally, mostly shuffles while pushing a walker either inside or outside the house.
Mobility - most often unable to stand without assistance, her legs are not free to move, her hands and fingers become too stiff to handle craft objects, difficulty doing up buttons. Usually she is unable to rise from the toilet and pull up her clothing. In recent months, while walking with her walker, she loses tone in the muscles of her left leg, which tends to collapse beneath her weight and she has almost fallen but has been save by grabbing me or other objects. She has difficulty going up and down steps and fears doing so, especially if there are no railings.
Freezing - Unable to initiate or continue motion when walking, unable to "tell" her feet to move or step, unable to move toes etc of her feet to maintain balance (this frightens the hell out of her).
Stiffness - inability to move arms and legs easily. I believe this contributes to her inability to wipe herself well after a bowel motion, tending to cause thrush and urinary tract infections which are minimised by her toilet at home being fitted with a bidet.
Nocturia - needing to empty her bladder up to 6 times each night, usually needing assistance to sit on the commode in the bedroom.
Dyskinesia - uncontrolled painful movements (in her case legs and feet) causing cramping in leg muscles usually due to peak dose levels of L-dopa, but [she] seems to also suffer diphasic dyskinesia that occurs when serum levels of L-dopa begin to rise and again as L-dopa serum levels decrease to near zero in the 4 hour cycles of her conventional medications (Apomine infusion has not eliminated the "conventional" medications) so in any one 4 hour cycle she may experience three dyskinetic periods depending on medications which are not the same at each 4 hourly dose.
Peripheral Neuropathy - weird tingling sensations in feet and legs, numbness in feet ( causes difficulty in "knowing" where her feet are, sense of swelling in feet (not observable in a physical sense).
Myoclonus - a weird "shudder" she senses across her shoulders and up into her head. This happens most frequently as she is dropping off to sleep, causing great difficulty in falling asleep, which together with the nocturia, makes for a very poor night of sleep. Over the years she has attempted to describe this sensation as "someone walking over my grave", a comment that I and others have tended to dismiss as nothing more than a quaint colloquialism.
Spatial Orientation - she has difficulty sensing relative distances between objects, whether surfaces are level, fears walking on a sloping path, fears stepping across a gap (for instance between a railway carriage and platform).
Claustrophobia and Agoraphobia - she fears restricted spaces (such as the toilet rooms in many houses, many built without the need of a walker or an accompanying carer in mind and confined spaces such as building lifts), cluttered areas where obstacles may impede her movements, and, to a lesser degree, wide open spaces without objects to grasp or sit upon.
My descriptions above are my layman's interpretations; Google and Wiki will clarify.
So your comment that "it's all in her mind" is true in a sense, since in her "mind" does she perceives her environment, senses pain and initiates and maintains activity but in the way you intended was hurtful and wrong. Parkinsons is a debilitating chronic condition with no cure, medications only alleviate symptoms for which the price is other compounding difficulties.
[.......]
So, no, we are not attending [Granddaughter's] wedding simply because I decided, all by myself, that a 2 day trip each way and several days in [Pivot City], with nights spent in motels of varying degrees of hospitality for those with a disability, was more than [she] should tolerate. I contemplated attending by myself while placing her in Respite (for which we have gained approval and assistance for up to 65 days per year), or called upon relatives to stay with her in my absence, but I decided that I cannot desert her to either hospital-like conditions or to others inappropriate to help her with private matters. Her use of the Apomine infusion pump in either situation was of no concern since the palliative care nurses are able to call to attend to attend to that each day. Obviously, temporarily staying in a relative's house in [Big Smoke] is completely out of the question.
Our recent Golden Wedding Anniversary reminded us that vows made, so easily broken in many cases, were to look after one another, come what may. We are doing our utmost; other issues are subsidiary.
And shit happens.
**************************************************************************
So, please, when referring to the behaviour and emotional state of a PWP never ever say "it's all in the mind" (for that matter, when referring to anyone with a neurological disability). For if it's not of and in the mind then we are not human.
Yet what the above has alerted me to is our unpreparedness for what must surely happen within the coming decade (sounds so much longer than 10 years) when we have both exceeded our "use by dates", We may have wills, powers-of-attorney and ACAT assessments for respite in place, a reasonable asset backing but how in hell do we prepare for the personal, emotional and practical matters when one of us dies? Two scenarios, neither of which one wishes to contemplate.
Not much has changed otherwise. Last week we made the short trip to Hot Air City where we bought an "over the bed" table, on wheels, of the type used in hospitals, a better type of bed pole and ordered a Revolutionary Chair, an expensive chair on which the seat is able to rotate +/- 90 degrees as well as forward by some 100 or so millimetres for use at a table or desk, because she is frequently trapped. frozen, facing the kitchen table or her desk and I need to drag the chair on which she is seated across the floor in order to rescue her - not good for me or the furniture. I may buy a second should the first be successful.
One morning when the Apomine infusion needle was removed there was quite a blood flow, requiring a small round plaster to stop the flow. Days later there is quite extensive bruising around the site. She often reports that on initiating an Apomine bolus dose the big toe on her left foot "tingles"; she yelped in surprise the first time this happened. And if I have her do the Parky finger-to-thumb touching exercise the top of her head tingles and/or itches. The itchy areas on her arms and legs have disappeared, leaving only small scabby bits where the skin had broken. An area on the back of her neck also began to itch and was irritated by the cord supporting the Apomine pump bag but that has almost cleared.
Even though she adjusts the height of the bed at times during the night, there remain a mountain of pillows around her bed and sometimes I wake to find her upside down on the bed.
Some nights she may need the commode only twice, usually more frequently. For instance, this morning between 4am and 5.30am she used the commode 5 times. I must contact the OT at the hospital because the replacement commode is too high, her feet don't touch the floor when seated, and sometimes helping her on and off is a strain.
She found the word "Myoclonus" in one of her PD books; a word and description she over-looked in the past. We are so pleased to have a word to describe the feeling when speaking to learned professionals. Similar to the word "diphasic" mentioned by Polly the PD nurse. A misguided sense of achievement perhaps?
posted by Kilpike | 10:42 am
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